Do you have COPD? What level of care ... - Lung Conditions C...
Do you have COPD? What level of care do you receive?
390 VotersPlease select all that apply:
Hi - have answered the Q's. I ticked the annual review box, though would point out that I have six monthly reviews at GP's with respiratory nurse (spirometry etc), as well as six monthly oxygen reviews with the Specialist Respiratory Nurse visiting me at home. Perhaps it varies across the regions? They seem to be pretty much on top of things here in SE Cornwall - have noticed huge improvements over the past four years! P.
hi had my review tuesday, first flue jab, then weight check, spirometry x two,discussion on lifestyle etc, medcine check, changed seretide mist to accuhaler, ventolin to salamol easy breath. given action plan, review booked in three weeks time for follow up.
I am really pleased with my GP who is a COPD specialist. I will have a rescue pack when he is happy that I can recognise when I need to use it. This is because I have only had one chest infection in 10 years.
I was told about PR but he felt I didn't particularly need it as I keep fit and do quite a lot of aerobic exercise.
Lynne
Hi are you sure you have COPD that has been confirmed with spirometry ? You need to have a spiro test even if your GP is a specialist in the subject.
I must say I was wondering the same thing! It seems many GP's are diagnosing COPD without spirometry. One friend at PR was diagnosed at my old surgery (not a lot of knowledge forthcoming when I was there, nor support for that matter), whereas I had my diagnosis from consultant at hospital. All sorts of tests including echo, the stickers on the chest thing (can't remember the name) etc etc, concluding with spirometry and diagnosis.
Although I am offered a review of sorts I didn't tick the box. The surgery nurse usually weighs the babies and knows less than I do about copd. She asks me and if I don't know she looks up my results on the internet. So I no longer attend. I do see the specialist at the hospital every 4 months. Specialist says im severe now. That about right as I can't get about much. I was turned away from the surgery without a flu jab despite having booked one as the receptioist said oaps first and they will try and fit me in after they are all done in December so I went private and paid. Don't have a rescue pack but the specialist has me on daily antibiotics now.
You definately need a COPD flare up plan and a rescue pack despite being on ABx longterm. The longterm are to help prevent infection but should one develop you should hav steriods and ABx (broad spectrum) on standby at home.
whats ABx broad spectfum
ive worked it out,abx means antibiotics, im getting on in life and i dont understand these abreviations,i prefer plain speaking.
You have severe COPD. That should automatically put you on the high risk list and therefore a priority for early flu jab. Suggest you go back and question them about this decision. Point out you have a 'severe' diagnosis.
Johnwr
On the whole my husband is well supported by the specialist at the hospital and the Doctors. He has tried Rehab. Also able to have Flu Jab for many years and as his carer I can have one too. Doctors should give you one. Anyone with COPD should be given one.
We are in the Birmingham area. He is on the highest dose medication they can give him at the moment. so he needs to be free of infection to keep well. So far so good.
Hi Carol
My husband has COPD and I am his carer we both had flu jabs at the end of last year. According to the doctor my husband is also on the highest dose medication he is also on warfarin and is on oxygen 24 hours a day.
Have you noticed that your husband's appetite has changed I think that the meds affect their taste. My husband also feels the cold more than he used to. We do not get out together very often mainly because of the oxygen situation. I am also a 'carer' for my mother who is 92 which makes life quite hard.
I do not feel that the hospital are very supportive and the at the last visit they talked about palliative care.
But we keep positive we now live with my daughter and son-in-law and my two grandchilden which means our life is not dull!
The questions may connect things that don't have the same answer. Don't know whether this will skew the results?
For example, I do feel supported but don't really have any opportunity for discussion.
I do have rescue meds but no written action plan to my knowledge.
I have the flu jab but no annual review of meds since the first year because like linsabout I also had the surgery nurse trying to 'review' me, which consisted of her asking me what meds I took, what level oxygen I used, and her making a list. There was no discussion of how the meds worked for me, what effects they had or whether the oxygen level was the correct one for me, just the list making. I asked her if this was what the review consisted of and she said yes, just to check what you are using. She could have got all of this from reading my notes. I have not bothered attending since.
I think thats terrible being turned down for a flu jab until all the pensioners are done. It certainly doesn't happen here in Torquay.
they are very good here in Plymouth also. i usually havea surgery note put in with my repeat presc. telling me when the flu jabs are in so i can book for one .......
i have bronchitis, just after my cutles i have a blueish tinge its about 34mm any suggestions
I am not impressed with the local care for chronic airway diseases, apparently we have the biggest hospital in England, but no facilities for pulmonary rehab,physio or care of long term lung diseases. Leicester is the nearest which is 3 to4 hrs away by public transport and when I visited there I ended up with a drug suggested for nerve pain for my cough and local physio when there is none in Coventry.!!!!
Appalling!
glad you agree auntymary, seems pointless to me for BLF to discover people who are ill, when in theory theres no facilities to help them in some areas anyway
i live i dover kent i am 38 years old and was diagnosed with copd in 2008 (chronic asthma and chronic bronchitis) And was absolutley disgusted to find out my lung specialist was'nt informed that in 2003 i contracted double pneumococal pneumonia and was in a coma for two weeks with other complications including blood poisoning.Whilst in a coma my father signed a form for me to be part of a beta diagnostics in lung injury drug trial (a human guineapig basically) and to this date they have still not told me whether i had the real or dummy drug and still have no answers as to if this drug trial had any negative affects on my lungs??? does anyone know of this drug trial and whether anyone else has had this and have there lungs detiorated since taking part in this trial??
I recently had a Lung Function Test in August 2012 which confirmed COPD I saw the Doc, She said nothing about it really but offered an inhaler. She also gave me a print out and highlighted the fact that I had about 2 years to live. Told me if I needed anything not to hesitate to contact her and see her again in 3 months.
That's it!
I have been really depressed ever since. This is first time I have said anything but I cannot see this doctor anymore.
Hi, i had an xray in June2012, given antibiotics and a blue inhaler by the doctor and sent on my way. i thoutht i must have a chest infection and thought no more of it. in November 2012 i was sent a letter about the need for a flu injection and a leaflet about keeping well in winter with my COPD. i was shocked i had no idea i had it; the doctor never mentioned COPD. when i made an appointment to see the doctor i had to see a different one and she asked if i had been to the hospital for tests etc; shouldn't this info be kept on my file. really disappointed and a bit confused. i really feel for you, is the doctor sure you only have 2 years?
i was diagnosed with C.O.P.D in 1984 at the age of 49, the doctor read out the letter from the hospital that did the tests they told me to only expect to live another 2 years. it was a hell of a shock as i had to stop work. its been a long hard road but i reached the age of 77 last month.so if you are sensible and don't take risks with your health and keep fighting you may well win the battle for a bit longer than they expect you to. good luck
This really is the most disgusting, uncaring and unprofessional attitude that I have ever heard of! For goodness sake...change your GP!
No one can say or certain how long any of us will live but you should be having regular spirometry tests, annual flu jabs plus a one off pneumonia jab and definitely pulmonary rehab.
No wonder you're depressed!
If it helps Alan, I've had COPD pretty bad for over 5 years now and apart from a bout of pneumonia i have remained pretty stable. One thing that i would suggest is to insist on seeing your Doctor outside general practice hours (when it is quiet) as you don't want to be amongst a room full of germ & virus carrying patients !
Doctors like any other profession vary and also have off-days, so why not go for a second opinion. Good luck !
i been involve in a moto bike accident ,i after a week in hospital i starting coughing blood ,just thinking is something in my trout,i been to my GP hi send me to hospital for scan like a tube one ,a week later ,the professor said to you have emphysema bronchi's co pd and something else,he give me a powder and inhaler, and every time i start coughing give antibiotic ,,this a tree years ago,know i am easy to get in faction ,my blood pressure is higher,i been to a nurse in my GP she take my blood pressure
13'12,12 she said is normal.i have a machine for blood pressure at home,she is wrong,what can i do ,is very dangers for me ,what can i do???
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I am actually getting worried because I am not being told or given any help as yet to my diagnosis of COPD. I have to ask my Dr to do things for me , but must say he si for the first time giving me blood tests. When i was admitted to hospital and was told then that I have COPD and sent for a lung function test, my
Oppps My Dr didnt seem to think i had COPD... Yet I was the one who asked him tp follow up appointments... I feel quite lost with this , yet after asking my Dr to follow up , i have now heard and am going for an appointment at the hospital. This was because of the lung function test .... How do i get the support I need ? Any advice would be grateful ..
I have never smoked,and not around anyone who does smoke!
I had to change my GP(hospital's and Consultants advised me to change GP) to get help with my Asthma. I had not realised how bad my GP had neglected me until I changed GP I now have Asthma/COPD and wonder if I had not been neglected by my last GP could the COPD been prevented?
My new GP and staff could not do more to help me they are all brilliant and fantastic. I also have the support and care from brilliant team work. Rapid Response, Matrons, Paramedics, Nurses. Hospital. Thank you to all of them!
If your GP is not helping you find a new GP that will. There is good and bad in every profession!
I have been left to my own devices more or less since being diagnosed with moderate COPD 14 months ago. I had to fight my GP to get on a pulmonary rehabilitation course, which l completed in April.
I asked my doc 6 months ago if my condition would be reviewed even on an annual basis only to be told that there was no point until l become very ill. I have told the doctor that l feel lm getting worse, and was told that was to be expected. Still no review forthcoming. I also told the doctor that l feel the inhalers l am on are as much use as a chocolate teapot, again it falls on deaf ears.
I feel totally isolated ;-(
I actually get a lung function test every 3 months from my pulmonary nurse, so I feel lucky, if the weather is very bed she does suggest I do not go. I hardly ever see my gp for copd.... Joan x
COPD, Scared to death did pulmonary Rehab finished on Tuesday this week now got an appointment with Papworth's transplant team. I was in intensive care life support in Dec & Feb and was on the DNR list. Had two infections at once. do not how to cope at all. i feel my confidence has gone i hate going out with oxygen tanks, useless to my wife
My surgery rubbish I have copd and Asthma never get all these reviews and test everyone on here seem to have. And if I'm il there is at least 2 week wait to see a doctor .
I have copd & had hospital admissions pynumonia in the past & plursy . Have emergency pack streiroid.coghing lots off Pylem up green . Am on max medication & nebulisers limited mobility. Community team are good call to my home to check on me. The hospital consultant gave me high resolution Ct. all other tests . Consultant now says I do not require oxygen & referring me for transplant . Have no other medical conditions. I am worried about referral to transplant . Am on max meds & age 55 the consultant says don't require oxygen . Anybody share any info with me . Thank you Bernadette
